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Going Deaf and Blind in a City of Noise and Lights

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Alexander conversing with her deaf friend Josh Swiller at a party; her on-again/off-again boyfriend Alan Pinto is far left.  

It doesn’t always work out so well. Recently, she ran chest-first into a guy, and the contents of her open backpack flew across the crosswalk. She couldn’t see her stuff, and the traffic began to move. The guy called her an idiot. Pinto says she came home crying. To prevent these incidents, she always takes the same neighborhood routes, down to the step. “You have to be so careful of those open cellar doors at night,” she says. “They’re known as death traps.”

The Upper East Side’s broad, clear sidewalks and grid system are particularly popular among the blind. Grossman is brave; he often trolls new neighborhoods solo. He figures that if he gets lost, he’ll just call a friend to come find him or wait until he hears footsteps. This, everyone agrees, is a built-in security system of New York: You’re never alone. Any time of day or night, someone will pass within a couple minutes. And it’s always pretty safe. “I’ve been on subways where there’s rough kids talking crap, and then I hear, ‘Yo, let the blind guy through!’ It’s like a moral circle.” I ask if he’s ever been hit by a car. “One time, I felt myself stray in a major crosswalk,” he says. “I knew I was in the middle of the intersection. So I just said, ‘Yo, someone help me!’ and someone ran out and grabbed me.”

Alexander watches as Grossman’s wife leads him to the bathroom. I ask if she’s doing any other planning ahead. Her blue-green eyes look at me plaintively. “How do you plan ahead for going blind-deaf?”

Alexander was raised to have high expectations. “My mother is totally perfect. She writes perfectly and sings and plays the piano and is beautiful.” The numerous collaged family photos in her apartment resemble Ralph Lauren ads, an intensely attractive clan with dark eyebrows and piercing blue eyes. Her father and twin brother are lawyers. When Alexander was 12 and first experiencing vision problems, she was diagnosed with retinitis pigmentosa; not until she was 20 was it understood that she had Usher’s. The carefree life she had known, which had included scampering around Yosemite as a child, was no more. But her mother, Terry, a school administrator, instilled in her the belief that she could still live a very full life and should never pity herself. “What’s her alternative?” says Terry. “She could be part of the wild world that everyone else is immersed in, or she could succumb to a quiet, dark world.”

First came a series of bruised knees from banging into open drawers. Then the tinnitus started in college, a persistent ringing in her ears that presaged hearing loss. Alexander responded by joining the wildest world possible, with a rash of teen partying and slew of eating disorders through college. “So much of my eating was about not being able to control things,” she says. Just after college, her vision took its first serious dip. She coped by dating. “I don’t want to say promiscuous, but I used to think it was easier to just make out with someone if I couldn’t hear him. They didn’t know that the real me wore hearing aids.”

Almost everyone I interviewed found a polite way to mention her ease at attracting men, but potential boyfriends don’t tend to respond well to Usher’s. Sam Swiller, who is still close to her after their failed romance, gamely explained his hesitancy. “The unfortunate thing about her disease is you don’t know how quickly it’s gonna get bad. And while things were perfectly great then, I was always thinking about the future, and it didn’t give us enough time to develop the present. You ask yourself, ‘Am I going to be able to get what I need from this individual?’ I was idiotically overcome by a relationship where neither of us could make restaurant reservations by phone.”

Her family members have found themselves in an emotional wash cycle, but “they treat me like I’m normal,” says Alexander. “Kevy [Kevin, her twin brother] mumbles on the phone. The other day, I didn’t hear Peter ask me something, and he goes, ‘I said, “What ... are ... you ... going ... to ... eat ... tonight, fuck-er?” ’ He just gets it. Honestly, it would be much harder for me if my brother had it and not me,” she says. “In some ways we’ve coalesced around Rebecca,” says Terry. “I don’t know that I would be involved with anything that [my ex-husband] is doing were it not for us following research. We’re not in the same social circles, but we’re very close with the kids.”


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